Any suggestions that will help before and during radiation

Searching4hope

Was.wondering if there is anything that may have helped before or during radiation that you could share with me.  I am juicing carrots because I was told it helps the tissue to not burn and break down as bad.  Any advise would be appreciated!!  I was diagnosed with moderately differential SCC.  I had a portion of my tongue removed and had 26 lymphnoids removed and 2 came back positive from my neck dissection.  I'd like to be prepared and have things on hand if needed.  I don't know what exactly to expect and would love some information and guidance.  Doctors know a lot but actual experience is most helpful I have learned!!

ERomanO

Hello and welcome to the forum

I'm a little confused with your wording as you're talking in past tense as thought the radiation has already taken place.  Maybe that was just a typo.  But if you are preparing to begin radiation soon there are plenty of experienced members here for sure.  As for keeping the skin protected during radiation, I used Aquaphor as recommended by my RO.  He said there were other products that work well but that Aquaphor was effective and inexpensive.  Folks on here have used other products and they will chime in I'm sure.  I took a few 100% cotton tee shirts and cut off the collars to wear around the house while I kept my neck slathered with the Aquaphor (ecept for when I went for radiation as the skin needs to be claen and dry.  You will also need a sacrificial pillowcase or two to use if you end up using a product like Aquaphor because it's petroleum jelly based and soaks into fabrics that come in contact and ruins them.  I personally believe that our genetics come into play regarding how well our skin heals... I suppose the type of rads used does too.  I had proton beam radiation and my skin healed very quickly after radiation was complete.  I have no idea what you can do beforehand but believe that drinking LOTS of water would be a good idea.

Best of luck.  Keep us posted with your results.

Searching4hope

Thank you so much!!!  I have

Thank you so much!!!  I have not started radiation yet.  I have only had my surgery.  Just trying to learn all I can and be prepared.

 

ERomanO

Will you be getting chemo as

Will you be getting chemo as well?

Searching4hope

ERomanO said:

Will you be getting chemo as

Will you be getting chemo as well?

Radiation is all they have

Radiation is all they have mentioned.  I asked at first about both chemo and rad.  They seem to think radiation is all I need.

ProustLover

Searching4hope said:

Radiation is all they have

Radiation is all they have mentioned.  I asked at first about both chemo and rad.  They seem to think radiation is all I need.

Yes, Welcome to the Forum

The Superthread at the top of the posts is a wealth of info about what to expect, and what you might do.  ERomano's eperience with Aquaphor is the same as my husband's - it was greasy, but effective  The advice to drink massive amounts of water cannot be overstated.  This will help keep your swallowing function intact. You should know that the first couple of weeks may not be too bad.  But effects do start to compound, and the worst may be the week or so after radiation actually stops, when there may be significant issues with mucus.  Your salivary glands  and taste buds will no doubt be affected, much of which will ikely recover.  You'll awant to have a good juicer or blender on hand for nutritious liquid "meals."  There are varying opinions about whether to get a feeding tube "installed" right from the start.    Evperiences with radiation vary greatly...but the one thing in common is that they eventually end.  Wishing you all the best as you move forward.  This too shall pass!  

Searching4hope

ProustLover said:

Yes, Welcome to the Forum

The Superthread at the top of the posts is a wealth of info about what to expect, and what you might do.  ERomano's eperience with Aquaphor is the same as my husband's - it was greasy, but effective  The advice to drink massive amounts of water cannot be overstated.  This will help keep your swallowing function intact. You should know that the first couple of weeks may not be too bad.  But effects do start to compound, and the worst may be the week or so after radiation actually stops, when there may be significant issues with mucus.  Your salivary glands  and taste buds will no doubt be affected, much of which will ikely recover.  You'll awant to have a good juicer or blender on hand for nutritious liquid "meals."  There are varying opinions about whether to get a feeding tube "installed" right from the start.    Evperiences with radiation vary greatly...but the one thing in common is that they eventually end.  Wishing you all the best as you move forward.  This too shall pass!  

Thank you!!  Great info.  I

Thank you!!  Great info.  I will do whatever to stir clear of.a feeding tube.  The surgeon office called today and I will see him Wednesday for a follow up.  Hopefully he will have an appointment set up for the onocoligist.  I have not met with them yet not have I seen a ENT.  So want to move forward and get this behind me!!!  I appreciate the comments from all!!

ProustLover

Searching4hope said:

Thank you!!  Great info.  I

Thank you!!  Great info.  I will do whatever to stir clear of.a feeding tube.  The surgeon office called today and I will see him Wednesday for a follow up.  Hopefully he will have an appointment set up for the onocoligist.  I have not met with them yet not have I seen a ENT.  So want to move forward and get this behind me!!!  I appreciate the comments from all!!

Very Understandable

For sure you want to get this behind you.  Folks here say that recovery from radiation is measured in weeks, not days.  One day at a time is the mindset to have. It's  natural to want to avoid a feeding tube, but they can really help, rather than battling every bite.  Like you, my husband started out with surgery on his tongue.  His tongue developed "mucosal outbreaks" farily early on in radiation, and I've always suspected that the surgery made his tongue more suseptible.  It was tough having to get the feeding tube in the midst of radiation, but it turned out to be a big help.  And he says it wasn't so bad.  I forgot to mention that there are swallow exercises they'll probably teach you  - another thing to help you get ready.  Sending best wishes your way.  

wbcgaruss

I'm With ProustLover

Recovery is slow and is measured in weeks and months, not days and weeks. As far as a feeding tube I think they have to go down your throat to intubate you for the operation and into your stomach to put the feeding tube in so if the radiation swells your throat it may be more problematic putting it in later. The medical team I had would not start treatments till a feeding tube was in and it is good I had it because I could not swallow anything for several months. Ask them about it. Also yes make sure you get swallowing exercises because the speech therapists say if you stop swallowing long enough you will have to learn to swallow again. Make sure you see a speech therapist your team probably has one-Take care-God Bless

Logan51

Uh-huh

Ditto to Russ and Proust. The Rad & Chemo Dr.s are supposed to know what their treatment will do to you. My very first visit to the Chemo Dr.: Power Port, Feeding Tube, and "Don't worry about the pain. We'll have you on Morphine." My tx was concurrent C&R with unknown Primary, so they zapped me in 20 places/session- over 11 years ago. I was given no advice on preparing, so I just dealt with during and after with "Magic Mouthwash" and Nystatin, along with Medincines.

From my experience, I would ask the Rad Dr. how many Rads (Gys) applied to the base of the throat, because the scar tissue result can cause complications. Hopefully the fact you've had Surgery and removals will limit the amount of Rads applied.

Good luck, and feel free to ask questions and let us know your concerns.

PipLily

Hello!

and welcome to a wonderful forum! The folks on here really helped my husband and I these past few months! He was diagnosed in January, and finished treatment June 3. He had BOT Cancer with positive lymph node on the left side. Treatments were TORS surgery with bilateral neck dissection, chemo, 30 radiation treatments to left neck. 

Looking at him now, you would be hard pressed to know he went through such rigorous treatment this year. Much of what I learned was from this site! I used a combination of three products on his skin throughout radiation. Immediately after radiation, I had him apply 100%, no alcohol, Aloe Vera gel to his neck. Midday, we applied Organic Coconut oil. At night, a liberal slather of Aquaphor. We did this every day, and happy to say that at the end of radiation, his skin was very mildly pink. No burns, no breakdown. Not sure if it was our trifecta, but we were happy with the results. 

He also drank two high calorie, high protein shakes every day, and supplemented with lots of eggs, pastas, etc. He lost around 20 ish pounds. He did not have a feeding tube.

There is such a wide spectrum of experiences during treatment! But know this.......you will come out the other end! Truly! Take every day, or every hour if you need to, as it comes. And before you know it, you will be done with treatment! Any questions, just ask! You’re in a great place with this forum!

Very best wishes!

Elizabeth

Searching4hope

wbcgaruss said:

I'm With ProustLover

Recovery is slow and is measured in weeks and months, not days and weeks. As far as a feeding tube I think they have to go down your throat to intubate you for the operation and into your stomach to put the feeding tube in so if the radiation swells your throat it may be more problematic putting it in later. The medical team I had would not start treatments till a feeding tube was in and it is good I had it because I could not swallow anything for several months. Ask them about it. Also yes make sure you get swallowing exercises because the speech therapists say if you stop swallowing long enough you will have to learn to swallow again. Make sure you see a speech therapist your team probably has one-Take care-God Bless

Thank you!!  I had a side u

Thank you!!  I had a side u therapist evaluate me in the hospital and released me the same visit.  I do feel I need it cause some words just are not plain.  The 9th made a month since surgery.  I was.thinking a feeding tube would be better before radiation through the nose but I had one I the hospital but they removed it.

Searching4hope

Searching4hope said:

Thank you!!  I had a side u

Thank you!!  I had a side u therapist evaluate me in the hospital and released me the same visit.  I do feel I need it cause some words just are not plain.  The 9th made a month since surgery.  I was.thinking a feeding tube would be better before radiation through the nose but I had one I the hospital but they removed it.

Speech therapist*

Speech therapist*

Searching4hope

Logan51 said:

Uh-huh

Ditto to Russ and Proust. The Rad & Chemo Dr.s are supposed to know what their treatment will do to you. My very first visit to the Chemo Dr.: Power Port, Feeding Tube, and "Don't worry about the pain. We'll have you on Morphine." My tx was concurrent C&R with unknown Primary, so they zapped me in 20 places/session- over 11 years ago. I was given no advice on preparing, so I just dealt with during and after with "Magic Mouthwash" and Nystatin, along with Medincines.

From my experience, I would ask the Rad Dr. how many Rads (Gys) applied to the base of the throat, because the scar tissue result can cause complications. Hopefully the fact you've had Surgery and removals will limit the amount of Rads applied.

Good luck, and feel free to ask questions and let us know your concerns.

5 days a week for 6 weeks is

5 days a week for 6 weeks is what I have now been told for rad treatment.

Searching4hope

PipLily said:

Hello!

and welcome to a wonderful forum! The folks on here really helped my husband and I these past few months! He was diagnosed in January, and finished treatment June 3. He had BOT Cancer with positive lymph node on the left side. Treatments were TORS surgery with bilateral neck dissection, chemo, 30 radiation treatments to left neck. 

Looking at him now, you would be hard pressed to know he went through such rigorous treatment this year. Much of what I learned was from this site! I used a combination of three products on his skin throughout radiation. Immediately after radiation, I had him apply 100%, no alcohol, Aloe Vera gel to his neck. Midday, we applied Organic Coconut oil. At night, a liberal slather of Aquaphor. We did this every day, and happy to say that at the end of radiation, his skin was very mildly pink. No burns, no breakdown. Not sure if it was our trifecta, but we were happy with the results. 

He also drank two high calorie, high protein shakes every day, and supplemented with lots of eggs, pastas, etc. He lost around 20 ish pounds. He did not have a feeding tube.

There is such a wide spectrum of experiences during treatment! But know this.......you will come out the other end! Truly! Take every day, or every hour if you need to, as it comes. And before you know it, you will be done with treatment! Any questions, just ask! You’re in a great place with this forum!

Very best wishes!

Elizabeth

I have been eating what I can

I have been eating what I can.  I have been juicing carrots also.  I was told they help to not have as much skin break down and burning.  I figure it can't hurt.  All of this is so over whelming and nothing any of us asked for.  I have my moments of downs but try to shake them quickly.

wbcgaruss

I Agree it is

Overwhelming. Stay strong and resolute that you will get through this. So many have and you will too. Thirty treatments seem like a lot right now but they will go by pretty quickly if you take things one day at a time and one week at a time however it is best for you to work it out. I remember my first cancer diagnosis by my ENT and after that, I had to get a biopsy, then see a chemo doc and a radiation doctor for consultation, then get a feeding tube and a port put in, and a mask made, and then they set you up for all your treatment appointments. It is like a flood of stuff all at once and is certainly a load. The treatment center where I had my treatment done printed out a nice schedule for me so maybe they can do that for you. Also if you have been assigned a nurse navigator or someone to answer any questions you have to call them right away with any questions or concerns that's what they are there for and they want to help. Keep us updated on your situation and there may be some questions the folks on the forum can answer-Take Care-God Bless

Searching4hope

wbcgaruss said:

I Agree it is

Overwhelming. Stay strong and resolute that you will get through this. So many have and you will too. Thirty treatments seem like a lot right now but they will go by pretty quickly if you take things one day at a time and one week at a time however it is best for you to work it out. I remember my first cancer diagnosis by my ENT and after that, I had to get a biopsy, then see a chemo doc and a radiation doctor for consultation, then get a feeding tube and a port put in, and a mask made, and then they set you up for all your treatment appointments. It is like a flood of stuff all at once and is certainly a load. The treatment center where I had my treatment done printed out a nice schedule for me so maybe they can do that for you. Also if you have been assigned a nurse navigator or someone to answer any questions you have to call them right away with any questions or concerns that's what they are there for and they want to help. Keep us updated on your situation and there may be some questions the folks on the forum can answer-Take Care-God Bless

Thank you and God bless you

Thank you and God bless you also!!

nancytc

I used Calendula cream (made

I used Calendula cream (made from Mariogold flowers) every four hours during the day,(available easily online) and Aquaphor Ointment at night per my radiation oncologists recommedations. I had a schedule that my adult kids followed and checked off as I had chemo radiation which really can make you sick and I dont know if I could have stuck to it. I never had any burning just a bit of reddining of the skin. My skin on my neck looks totally normal after treatment .

Good Luck!

Nancy